What to choose

[Nancy]

Here's a link to St. Jude showing the mechanical valves they make and all the info on each design. It appears that some of them are available in larger sizes.

http://www.sjm.com/devices/devicetype.aspx?location=us&type=18

 

[Ross]

I'll withhold my comments on the Ross procedure.

 

[Creed3]

Hi Scott,
I don't think you will get any backlash here. There may be people here who do not agree with you, but they would never make you feel like your decision was wrong. Everyone's valve choice is a very personal decision and whatever you choose is right for you. I am the same age you are and I went with a mechanical valve because I wanted the best chance possible of not having to have surgery again. For me, coumadin hasn't been much of an issue at all and I am still very active and exercise etc....Not like what you do, but we have different lifestyles. We had our surgeries pretty close together. I am 9 1/2 months post op. All opinions are welcome here. People will let you know how they feel about something, but will not make you feel like you are being attacked.

Take Care!
Gail

 

[LoraW30]

I was 5 years old when I received my first valve implant. It was a mechanical valve and I don't believe we, my parents and I, were given a choice. If I remember correctly, my parents were told that tissue valves weren't used in children. Of course this was in 1978 and ideas have changed since then. Ever since, I have had mechanical valves. As long as I have been able to live a full life and the valve keeps that blood pumping, I consider myself lucky and blessed no matter what type of valve it is. IMHO of course.

 

[sylviayasgur]

hi all!
i agree with gail. valve choice is a very personal thing. either way your life is being saved, regardless of which valve is being used.

for joey (and i), ross procedure was the way to go. his surgeon who does primarily ross procedures suggested we have a backup choice lined up so that if there was a problem in doing the r.p. he would be honoring joey's wishes.
he also spent about 2 hours explaining the entire procedure and drawing diagrams based on joey's valve measurements, explaining how he would have to "taper" some areas.

i also believe that _and i hate to be negative here_ things can go wrong with any of these valves.
ross, you had a bum r.p., johnny cochran's initial cryolife synergraft fell apart in the surgeon's hands during surgery, christina's mechanical had to be replaced shortly after it was done..... this can happen with any of these valves.

so, in the end, although it does save one's life, it is still a "day at a time" thing. we've all talked about appreciating each day after the surgeries, not taking things for granted.
i think we are all aware that nothing lasts forever and we have to live life to its fullest, appreciate the small things, and enjoy it all while we can.

i didn't mean to get too sentimental, but in the end, any valve choice you make will be the right one.

be well all, sylvia

 

[scottvant]

Philosophical change of heart (ha ha ha...)

Philosophical change of heart (ha ha ha...)

Sylvia sez: >>so, in the end, although it does save one's life, it is still a "day at a time" thing. we've all talked about appreciating each day after the surgeries, not taking things for granted.
i think we are all aware that nothing lasts forever and we have to live life to its fullest, appreciate the small things, and enjoy it all while we can.<<

After word spread that I was in the hospital, (you know how bad news travels fast, especially on the internet--within hours of being admitted I was receiving flowers from college friends on the east coast I haven't seen SINCE college...) I got an email (a friend of mine was checking them and printing them all out for me to read while I was just lying there...) from a guy I didn't even know, about 3 pages long, just wanting to let me know that I wasn't the lone ranger--he had a valve replaced at 32 y.o. at the same hospital as me, two years ago--so he said he understood what it was like to be the youngest patient on the heart floor, etc. etc. (He has a bovine tissue and specifically decided against the Ross--we have since traded a lot of barbs about each other's decision; friendly, of course...) He said, "when you get out, whenever you feel like you need to vent, my door is always open."

I wasn't sure what he meant until a couple of months post-op, when I was out doing my walks through the neighborhood, I got this very powerful rush of gratitude, this feeling of just being overwhelmingly glad to still be here after what was a very intense, very sudden brush with death. (After the fact, one of my doctors told me that had I waited another week to seek help, they wouldn't have been able to; and it was not lost on me when my surgery was scheduled on a Friday (after already being in the hospital two weeks trying to get the endocarditis and anemia under control) and it was moved up to a Tuesday, as my blood was on the verge of becoming septic (toxic)... That was the most nerve-wracking night I have ever spent.)

I have found myself since this whole ordeal taking very much a "bigger picture" view of things. I'm no longer Mr. Aggressive Jerk in traffic. If it takes me two minutes longer to get where I'm going, that's worth not aggravating myself and others on the road with me... I was a chronic over-tipper before but I've gotten even more so. These days if there are homeless people loitering around out front of the grocery store I'm very apt to spend my last $3 on a sandwich for them. I have this newly-emphasized feeling if, if we don't help hold each other up, in the end, there'll be none of us left standing at all...

So I do know what you mean--I don't take a THING for granted anymore. No longer do I wake up, stare at the ceiling, dread going to work, and think, "Aw, sh*t. It's all still here.) Possibly as a physical result of feeling so much better after having my condition fixed, or maybe it's mental/emotional--but these days I practically spring out of bed, wondering what all can I get accomplished today...

Not to sound snotty or anything but I'm finding that people who say, "yeah, I know what you mean," probably don't actually know what I mean, if they haven't been thru it. That's why my new heart friend (the one who emailed me) talk all the time now; sometimes we just have to explain some little miraculous thing that happened today and realize that almost nobody else will understand why it is so moving...

Glad to hear I'm not the only one who had that after-effect..

Scott

 

[DANIEL]

On that note, may I add.........

On that note, may I add.........

Scotty,

As I just had my AVR, found your email to be very appropriate re life and what is meaningful. I appreciate it. Here is something I am adding, hope no one finds this too .........................


Daniel


A professor stood before his Philosophy 101 class and had some
items in
front of him. When the class began, wordlessly, he picked up a very
large
and empty mayonnaise jar and proceeded to fill it with golf balls. He
then asked the students if the jar was full? They agreed that it was.

So the professor then picked up a box of pebbles and poured then into the
jar. He shook the jar lightly. The pebbles, of course, rolled into the
open areas between the golf balls. He than asked the students again if
the jar was full. They agreed it was.

The professor picked up a box of sand and poured it into the jar. Of
course, the sand filled up everything else. He then asked once more if
the jar was full. The students responded with an unanimous--yes.

The professor then produced two cans of beer from under the table and
proceeded to pour the entire contents into the jar effectively filling the
empty space between the sand. The students laughed.

"Now," said the professor, as the laughter subsided, "I want you to
recognize that this jar represents your life. The golf balls are the
important things--your family, your partner, your health, your children,
your friends, your favorite passions--things that if everything else was
lost and only they remained, your life would still be full"

"The pebbles are the other things that matter like your job, your house,
your car. The sand is everything else--the small stuff."

"If you put the sand into the jar first, there is no room for the pebbles
or the golf balls. The same goes for your life. If you spend all your
time and energy on the small stuff, you will never have room for the
things
that are important to you. Pay attention to the things that are critical
to your happiness. Play with your children. Take time to get medical
checkups. Take your partner out dancing. Play another 18. There will
always be time to go to work, clean the house, give a dinner party and
fix the disposal."

"Take care of the golf balls first--the things that really matter. Set
your priorities. The rest is just sand."

One of the students raised her and inquired what the beer represented.

The professor smiled. "I'm glad you asked. It just goes to show you that
no matter how full your life may seem, there's always room for a couple
of beers!

 

[spartan44]

Scotty,
Thnx for the response. I'm still deciding on valve seclection. The surgeon up at Hopkins recommended the Ross, but said I was not ready to have surgery. The Cleveland Clinic is my tie breaker. I see them on the 28th and 29th for tests and a catherization.

I wanted to ask you about your workouts now. Can you lift any heavy weights or are you restricted to light weight and high reps?
Thnx
Dale

 

[scottvant]

Workouts

Workouts

>>I wanted to ask you about your workouts now. Can you lift any heavy weights or are you restricted to light weight and high reps?<<

I took it REALLY easy at first. Medical team recommended some supervised cardiac rehab at first, just to be sure, so starting 6 weeks after my surgery, I went to the lovely "Preventive and Rehabilitative Cardiac Center" at the hospital three times a week, 75 minutes per session--light stretching, and supervised (i.e. heart-monitored) cardio workouts on treadmills and exercise bikes. Did that for four months, until I got bored with it. I discharged from the rehab program early (at stage 2, there were 4 stages) with the blessing of the cardiologist on staff, since during all that time I didn't have a single blip on the radar--blood pressure never went up, pulse rate always steady, etc.

After a couple of meetings with my regular cardiologist re: what I can and cannot do now, here are the basics--I can do all the cardio exercise I can stand. One thing I've noticed is that my overall fitness level isn't what it used to be, but not because my heart isn't working--just because all that "taking it easy" has turned me to mush... So I usually get 5x weekly some sort of cardio for 30-45 minutes (about half what I was used to before but I'm workingback up to that.) At this point, I'm off weights entirely--no weightlifting at all. (Much to my chagrin.) This is probably not true of all patients, but in my case I'm dealing with some not-insignificant left ventricular hypertrophy we're trying to regress, as well as a bit of dilated cardiomyopathy. Both conditions my cardio insists will/should improve if not regress entirely as long as I behave.

To keep from turning into a complete couch potato, I'm doing yoga at least once a day. These days my schedule is:

M-F AM
20 min stationary bike (before breakfast--burns more fat that way)
30 or 45 min yoga session (usually abs or balancing)

M-F PM
30-45 min stationary bike
45-60 min yoga (power yoga or flow yoga routines w/ emphasis on chest, legs, and overall strength)

Su - Live yoga class

I don't know why, but weightlifting, the way we're used to it, is very bad for LVH. Yoga, I guess, isn't (although I swear I work as hard if not harder at that than lifting, but whatever, I'm not the doctor...).

I pushed the bodybuilding thing and the good doctor said that if, in at least a year, my LVH shows major improvement (his words) after two more echos, then he'd start me on a light weights/high rep weights workout if I want to...

Apparently there's no problem with either valve; it's the LVH that's screwed me out of my weights workouts. If you're in a situation where you're monitoring your heart and are aware of this sort of thing, this might not be an issue for you. There was a guy in my cardiac rehab sessions who had the same surgery as me at the same time, and was already starting on light weights when I left the program--but he had his valve replaced before he had any damage to his heart muscle, unlike me...

It'll depend entirely on your individual case, I suppose.

Scott, you can keep pretty killer shape just doing yoga, if some of the true devotees I see at my gym are any indication, so maybe when this year is up I won't even feel like risking the weights anymore if it means not doing any further damage to my poor overworked heart...

 

[ccrawford]

Scott - If you could monitor your BP while lifting some really heavy weights you would be amazed and alarmed at how high your blood pressure goes. I discovered this at a cardio rehab session using only 10# weights. I'd suggest you add some fast walking to your exercise regimen, and then you'll have a nice balanced program. I enjoyed your commentary on change of philosophy. Keep on enjoying those sunrises and sunsets, especially on your walks !!! Chris

 

[spartan44]

Workouts

Workouts

Scott,
Thanks for the repsonse. If I can't lift weights after, I will be kind of upset, but will deal with it. Sounds like you are doing great. Did you lose much weight/muscle since this whole ordeal started for you?
I think I'm like you, no concrete symptoms and have dealt with this all my life. I hope if I have the surgery that I feel like Superman after too.

 

[Tom F.]

You might also want to at least consider a Ross procedure as another alternative, especially as you are younger. Something to think about perhaps.

 

[scottvant]

>> If I can't lift weights after, I will be kind of upset, but will deal with it. <<

More or less how I'm with it at the moment, but I'll get over it. Surprisingly, since starting the Yoga, more of my muscle has come back than I expected. I hate to keep harping on that but if you lift now, and your doctors tell you after the surgery that you can't, it's a perfectly adequate replacement. (Unless you're a competitive bodybuilder...) Also, I don't know where you live, but here in L.A., guys doing yoga isn't all that weird. Other places, it may sound like it, I've gotten that response--"you do what?!?!?!?"

>> Did you lose much weight/muscle since this whole ordeal started for you? <<

40+ lbs, eesh, almost all of that muscle. BUT, that was from the endocarditis, and being that sick, with a 103 fever, for that many weeks. Running a fever like that just wastes you away... I imagine if I had KNOWN about my valve problem and gotten it fixed before I got that sick and let myself go to hell, I'd be in better shape now. Luckily, you won't have that to deal with.

>> I think I'm like you, no concrete symptoms and have dealt with this all my life. I hope if I have the surgery that I feel like Superman after too.<<

That was the surprising part. "Heart problem? What heart problem? My heart is fine?!?!?" I had a resting pulse of 60 (or below), worked out constantly, never felt short of breath, or any of it. But, since the surgery, even if I HAVE noticed that I have to build my endurance back up since I basically stopped working out when I got sick and during my recovery, about 7 months of just sitting on my *ss for the first time in 10 years; what I DO notice is an overall feeling of having more energy, better feelings of well-being in general, easy to spring out of bed in the morning instead of waging war with waking, no need for a nap after work in the afternoon, etc. I DO feel much better, even if before, I didn't feel broken.

Scott, good luck.

 

[scottvant]

>> You might also want to at least consider a Ross procedure as another alternative, especially as you are younger. Something to think about perhaps.<<

This is what I had, and so far so good. (Well, 7 months out. Probably too soon to REALLY tell, but I'm happy with this decision...) For all the usual reasons one gets a Ross--young patient, previously athletic and wanting to return to athletic activity eventually, heart healthy in all other respects other than the BAV, etc...

Scott

 

[LKC]

Dr. Lytle at CCF

Dr. Lytle at CCF

Hello Dale.

Dr. Lytle replaced my very leaky bicuspid aortic valve with a CE bovine in January 2002. He also put in some dacron tubing because my aortic root was dilated, but he was able to do it in such a way that he didn't have to disturb that part of the aorta, right above the AV, where the coronary arteries emerge. I was 52 years old at the time, and like you, I was "asymptomatic," though apparently my left ventricle was looking enlarged. I had mixed opinions from cardiologists: one said to do it then, and another said I could wait five years. So, like you are doing, I went to CCF and the guys there said they thought I should go ahead and do it, so I did.

Dr. Lytle was terrific. He has vast experience and is reputed to have extraordinary surgical skills. He was very patient, accessible, and easy to talk to; answered all of my questions; inspired great confidence. I have nothing but good things to say about him. And about CCF.

I agree with all here who say that valve choice is a personal thing, though it is difficult to evaluate the considerations of mechanical versus tissue when you haven't either gone through the surgery or lived with coumadin. Intuition and self-image are involved, but at least it isn't a "right or wrong" decision, only a "which is better" choice.

If I may make one suggestion, I have come to believe, in retrospect, that it was very valuable to me to have spent the time I did prior to the surgery listening to the guided imagery tapes. I listened to them and let them put me to sleep for two or three weeks before the operation, and I now think that, in a very subtle way, they helped me a lot to prepare for and to enter the experience in the right frame of mind. They are not a big investment, so if they don't work for you, you won't be out much.

Good luck to you.

LKC

AVR - January 2002

 

[ALCapshaw2]

Scott -

I was *very* interested in your comments about hypertropy and gradual recovery. My cardiologist told me NOTHING about LVH but I suspect that may be present. Do you notice any fluid retention? If so, has your cardiologist suggested any connection to LVH? What parameters indicate LVH in the Echo report?

'AL'

 

[spartan44]

CCF experience

CCF experience

LKC,

Thnx for your insightful comments. I have also heard that Dr. Lytle is great and am looking forward to meeting him and others and getting thorough and honest opinions. I'll look into the guided imagery tapes. CCF sent me material about it.
Thnx again

 

[sylviayasgur]

hi scotty, dale and all ,
guided imagery is really great for relaxation. i think chc gives out diane tusek's tapes/cds in their packets. they are amazing. i still use them when i can't sleep at night. she is such a nice person and has such a soothing voice.
check them out at:
http://www.guidedimageryinc.com/

about lifting weights.....
joey is by no means a body builder, but he is now lifting weights he was never allowed to lift presurgically.
i'm not sure what he lifts, but they are not just light weights with many reps. i think he alternates.
also, he runs and bikes about 5 days a week (when he is not on the golf course).
he feels much stronger and better than ever before. if anything gives out or hurts it's his joints or legs, etc. from overwork.
i'm sure it doesn't hurt that his cardiologist, although fairly conservative, is a marathon runner and one of his contemporaries.

good luck whatever choices you make.
be well, sylvia

 

[scottvant]

Sylvia sez: >>joey is by no means a body builder, but he is now lifting weights he was never allowed to lift presurgically. i'm not sure what he lifts, but they are not just light weights with many reps.<<

I guess what threw me was, my cardio said, 2 months post, "I don't want you lifting weights until July..." So July was circled in big red pen on my desk calendar... As July got closer and I guess it became apparent that my LVH/myopathy was still hanging around, the answer became "no more weightlifting for you."

Which is why I've decided to behave myself. I'm getting the impression that if those situations regress, then it won't be that big of a problem...

Time will tell.

 

[scottvant]

AL sez: >>I was *very* interested in your comments about hypertropy and gradual recovery. My cardiologist told me NOTHING about LVH but I suspect that may be present.<<

Mine didn't say anything either until a few months out and he put me on the Coreg to help handle the situation. I wanted to know what the drugs were for, and he told me. Why didn't anyone tell me this in the hospital, if you knew then? I wanted to know, and he didn't have an answer. Clearly a case of not telling the patient anything he doesn't need to know. Which is why I was irritated and distrusting of him until I got him to understand that I want to know EVERYTHING, right when he does. He's cooperating with that now.

>>Do you notice any fluid retention?<<

No. That has been the baffling thing--I actually feel WORLDS better than before the surgery, and no matter how hard I push myself in my cardio workouts, I never have "heart" symptoms--SOB, or lightheadedness, or any of that, and I don't get swollen or retain fluid. Still, I know there are issues--from the echo report:

>>If so, has your cardiologist suggested any connection to LVH? What parameters indicate LVH in the Echo report?<<

I notice, in the echo reports I got from all three doctors, one thing in common about the reports--they all seem to print out on a "standardized" report, and for any given reading where no value is indicated, your findings are considered to be normal. (All of this I have found out *since* I posted my question, "can anyone here read echos...") There's a section for valves, and under Tricuspid, Pulmonic, Mitral and Aortic there are several categories, regurg, insuff., or whatever. No values entered in those blanks indicates no detectable anomalies in the valves. The areas of my echo report where MY findings start to show up are the "ventricular wall motion." There are all sorts of medical terms for the different "walls" of the heart muscle, basal, anterior, superior, septal, etc... Again, normal readings are not reported. Several of the "walls" on my left ventrical indicate "hypokinetic," which I found out means, not moving enough--not contracting as hard as they should. I also have noted, "Reversed septal wall motion is seen and is a common finding in the post open heart surgery patient." On my septal wall areas on the report is found, "dyskinetic." I'm not exactly sure what that means but my cardio says it's harmless and nothing to worry about, I guess, other than it makes me "aware of," or "feel" my heartbeat in my chest more than I used to. (Which is true.)

The connection to LVH is indicated in a section called "wall thickness," and for the walls that are hypertrophied, a value ( like <=1.1 cm or something) is given. (In my case it's three walls on the left, one on the right, and septum...)

Again, my cardio stresses that neither my myopathy nor LVH is so advanced that it isn't completely reversible, at this point, Ijust have to be careful to avoid conditions that exacerbate LVH already present--like hypertension, WEIGHTLIFTING, etc...

We'll see.